lots of stress - daughter under evaluation

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jerrycubbins
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21 Oct 2010, 8:14 am

Dear all,

This a very long post and I have been writing it for hours. I am grateful to those who read it.

Our 5 year old daughter is currently being evaluated for ?Asperger's / ?Autism Spectrum Disorder.

We are both young doctors but have no experience at all in this subject. We have a general idea and did do some reading.

My wife and I had discussed the possiblity of our daughter to have autism/AS in the past when she was an early toddler but not for a couple of years. Many of the things we observed back than have improved or dissappeared. She now shows a lot more interest in people, volunteers with acts of affection towards us and her baby sister.

Autism/AS is also a rather common thing for other young doctors my age to recognize signs of in their children too, I learned over time to some comfort.

Recently, the subject was raised again (although not spelled out as such) by the preschool and she was put forward for evaluation by one of the teachers. The reasons were some problems with social interaction with other kids, sometimes not considering other children feelings, jumping the queue not waiting for her turn, and rarely getting obsessive about certain activity/things/ideas she gets excited about and not being able to let go and move to the next activity.

In the UK the evaluation, we learned, is a multidisciplinary lengthy process over many months. She is now in “the big school” and this has been involved.

My wife thinks the kid does not fit the diagnosis criteria we found online for AS and that she is normal but slightly "different". She says she probably is at the most borderline. She is hoping the final diagnosis will be negative. She feels the girl would have a normal life the way she is and that a positive diagnosis would only be a label, even a stigma that she will carry for the rest of her life.

My wife has a lot of unconsumed anger around this subject and against various people that were involved at one point or another so far. Although she says she would prefer the solution of stopping the assessment before reaching a conclusion, she fears that it would look to those involved (speech therapists, paediatricians, teacher) as not acting in the child's best interest and therefore count as neglect. This is probably true. In the case of a positive diagnosis she would certainly ask for a second opinion. She also says if the diagnosis will be truly positive one there would be no added benefit. Nothing we would do differently for her.

Personally, I believe my daughter may be in the spectrum although I am not sure if this is just my coping mechanism with a future positive diagnosis. I feel I would like the evaluation as objective as possible and I am sure I will certainly ask for a second opinion in the case of a positive diagnosis and possibly in the case of a negative one as well. Pretty much denial, one could say, probably.

*********************************************

I would like now to comment on the diagnosing criteria we found online:

From Aspergers Dot Com website
*********************************************

DSM-IV DIAGNOSTIC CRITERIA FOR ASPERGER'S DISORDER

A.Qualitative impairment in social interaction, as manifested by at least two of the following:

(1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

From the things above only eye contact applies somewhat to her. Her eye contact during conversation is fleeting, she is not avoiding it completely but not locking during conversation, comes and goes most of the time. I would not call is "marked". This is something my wife commented about me in the past, that I am not making enough eye contact.

(2) failure to develop peer relationships appropriate to developmental level

This I am not sure of. She is keen on other children's company but gets rejected a lot. She is most of the time somewhat overkeen for company of other children. We blamed this on not having a close friend her age and we felt she is better now after she had the company of a similar age cousin over the summer and started school.

(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)

Does not apply to her. Definitely. The opposite is true.

(4) lack of social or emotional reciprocity

We don’t thing so. We sometimes used to pretend we were crying as distressed when she was naughty. She would immediately revert and come and try to comfort us. It doesn't work anymore as she has been able to spot we were pretending for a long time now.
She comforts her baby sister when she is crying.

B.Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

No. I am not sure if it fits here but she can be really very concentrated and absorbed by whatever she is doing (drawing, looking at a book, watching TV) to the point of having to call her several times before she looks at you and answers. This is another thing I do as well, and annoys my wife many times.

(2) apparently inflexible adherence to specific, nonfunctional routines or rituals

No

(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

No

(4) persistent preoccupation with parts of objects

No

C.The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

No.

D.There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

Verbally she is very good.

E.There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

Very intelligent, creative, curious etc.

F.Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

I hope not

*********************************************

GILLBERG'S CRITERIA FOR ASPERGER'S DISORDER

1.Severe impairment in reciprocal social interaction
(at least two of the following)

(a) inability to interact with peers

I am repeating myself here: She is keen on other children's company but gets rejected a lot. She is most of the time somewhat overkeen for company of other children. We blamed this on not having a close friend her age and we felt she is better now after she had the company of a similar age cousin over the summer and started school.
We would not call this severe.

(b) lack of desire to interact with peers

Definitely not.

(c) lack of appreciation of social cues

Maybe sometimes in all honesty.

(d) socially and emotionally inappropriate behaviour

No

2.All-absorbing narrow interest
(at least one of the following)

(a) exclusion of other activities
(b) repetitive adherence
(c) more rote than meaning

Nothing in particular.

3.Imposition of routines and interests
(at least one of the following)
(a) on self, in aspects of life
(b) on others

No. Although sometimes she would be reluctant to go home on a different route than the usual one and would protest. Two years ago and she was 3 she was going on the train with one of us everyday and sometimes if she didn’t like the train that was coming she would say that that is not her favourite and she wouldn’t get on. We would force her and she would cry really hard for 10-15 min. It happened 5 o six times altogether probably.

4.Speech and language problems
(at least three of the following)
(a) delayed development
NO
(b) superficially perfect expressive language
What does this mean?
(c) formal, pedantic language
NO
(d) odd prosody, peculiar voice characteristics
NO
(e) impairment of comprehension including misinterpretations of literal/implied meanings
I can’t really tell.

5.Non-verbal communication problems
(at least one of the following)
(a) limited use of gestures
No
(b) clumsy/gauche body language
No
(c) limited facial expression
No
(d) inappropriate expression
No
(e) peculiar, stiff gaze
No

6.Motor clumsiness: poor performance on neurodevelopmental examination

Milestones all OK.
Rides a bike since age 4 without stabilisers.
She walks a bit funny sometimes with a “hop, skip and a jump”, the sort of happy gait. Does that count?
She may have increased joint laxity.

(All six criteria must be met for confirmation of diagnosis.) –
Nowhere near

*********************************************
She is very beautiful may I add :)
*********************************************

Any thoughts would be appreciated.

I am not sure where I want to go with this post or what kind of answer I seek from this community. It’s just that we are alone and have no one with any personal experience to discuss the matter with. Could the positive findings (eye contact, social interactions etc) just be part of the normal and she just needs to be taught a few things?

We are really stressed about underdiagnosis or an overdiagnosis. What I think is that there will uncertainty no matter what the result will come as. Goodhart's Law: "Once you measure something, it changes."

Thanks,
JC



ediself
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21 Oct 2010, 8:28 am

hello :D i have read your post, i am a woman on the spectrum myself , and i need to point something out to you: the symptoms checklists are mainly designed for male AS kids. in girls the symptoms may be lessened a lot or invisible. what you need to look for is this: does she appear to be hypersensitive emotionally? have you had the instinct to protect her from her "mean "peers since she started socialising? does she appear shy at times and very at ease at other times? is she silent a lot , does she seem to observe everything? those are really hard to notice and i don't blame you for not seeing it until now, but if you pay attention they can be signs she is on the spectrum. of course there are also shy NT girls, but if she seems not to approach her peers in a way they find "normal", and she doesn't get what she's supposed to do to be liked more, i suggest you ask her about those things. of course at her age she might still lack introspection but you could infer from her words if some of the things i mentionned seem to be true for her.



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21 Oct 2010, 8:33 am

Also, a realization I just came to in another thread - yes, these kids are all unique and different and the criterion are absurdly narrow. The real question is - if you put in place the accommodations and therapies for AS for your daughter, do the behaviors that concern you improve over time?



2berrryblondeboys
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21 Oct 2010, 8:41 am

Sometimes I think the easiest way to see if there is a problem is to watch her with other peers, and to watch other like-aged peers. Some things you might not even notice as problems because they've always been there and it just seems part of her.

But, it could also be, that she has some traits, but that doesn't mean she's on the spectrum. LOTS of people have traits, it's only when there's an abundance of them, does it become debilitating.

And, I guess, ask yourself (and have your wife ask herself), what does testing her harm? Even if she doesn't fit on the spectrum, are there things you can do that could help her adapt better anyway?

And I think your wife needs to ask herself - why is she angry about it? That her perfect child is being seen as not perfect? That she blames herself somehow? I know as a mom, you tend to feel guilt, even if it is misplaced. But, that is something she's going to have to deal with if she wants the best for her daughter. Fact is, most children are NOT perfect - that bubble would be burst sooner or later.



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21 Oct 2010, 8:46 am

(e) impairment of comprehension including misinterpretations of literal/implied meanings
I can’t really tell.

then do something like this, tell her something that could have more than one meaning, and observe if she takes some time to think it over. (breaks eye to eye contact for a sec) or tell her a joke she never heard before, a simple age adapted joke. if she says"that's just impossible..." or asks "what is the pea doing in an elevator then??"instead of laughing...just try it :wink:



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21 Oct 2010, 9:31 am

Since I have a son on the spectrum, and not a daughter, I have little experience with what AS looks like in a young girl. The only thing in your post that suggested AS to me was her freaking out about riding a different train.
When I read through the diagnostic criteria again, my son fits just about every one of them, except that he has good eye contact and can be flexible most of the time.

All I can say is that if the school is suggesting evaluation, then they must have a very good reason for it. She may just have characteristics, and that is ok. She may just be socially awkward. I don't really think getting the label will be a permanent stigma. If she has AS, her behaviors may cause her some difficulty, and the more you know about it, the more you will be able to help her.

I can sympathize with your wife somewhat. I think it is a normal reaction to feel anger that your child is facing difficulties that other kids don't face. If your daughter is diagnosed as AS, then the 2 of you will go through a process much like the grieving process. In time, it will get better if you choose to focus on how precious and unique your daughter is instead of focusing on the diagnosis.

Best of luck to you, and welcome to Wrong Planet!



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21 Oct 2010, 10:04 am

The label/not to label discussion has valid views on both sides.

How will diagnosis help your daughter? Will she get appropriate support at school? If yes, it is worth pursuing.

Your wife will find peace in this. It takes time to get used to the idea that your child is different from the child you were expecting.

You will eventually see that this child you have is absolutely amazing and will likely be grateful for all of her uniqueness. I know I don't want to change my children in any way.


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21 Oct 2010, 10:19 am

I would avoid "official" diagnosis if her problems are not hampering. All evaluations and stuff are very unreliable in mild cases. One doctor will tell one and the other other thing and the stupidity with PDD-NOS means basically "we don't have a clue". We even had a very distinguished doctor who told us that we can stick almost any label on my son (now that is very helpful, right) . IMO if the child has only some of the problems it is much smarter to invest time in helping him/her with those specific issues than to spend time and money on obtaining diagnosis.

I posted recently a link for a study done in UK about prognosis for children with "issues". It turns out the the ones without official diagnosis did the best and that too much therapies is counterproductive.

By the way, your daughter sounds like a great kid.



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21 Oct 2010, 10:39 am

JC,

Everyone has given some very good views on the subject. I can tell by your post you are an analytical, data based thinker. You are right about Goodhart's Law-kids are constantly growing and changing. It was my experience when we started the diagnostic evaluation and AS was first mentioned that I got very caught up in the diagnostic criteria. I know if you are a doctor you probably go by the DSM, however it is not black and white. Things that were in the DSM years ago are not there now. Diagnostic criteria changes. Really, the diagnostic criteria is not what should be focused on, eventhough I want to point out to you that the criteria does not call for a "quantitative" analysis of the criteria, but a "qualitative" basis, which you probably understand what that means.

I have a daughter with AS who is 7. At age 5, she had many "quirky" traits but AS never crossed my mind. I told myself she was genious and eccentric. I didn't want to acknowledge that there was something clinically "wrong". When that diagnosis is made by a qualified professional and you are forced to recognize it, your initial impulse may be to go through the diagnostic criteria and try to find reasons why they are wrong. I know I did. However, the benefit of early diagnosis is well documented-those who enter early therapeutic intervention do much better long term.

I would suggest the book "The Complete Guide to Aspergers" by Tony Attwood. It can go into the diagnostic criteria much more in depth and explains a lot about how girls can mask the symptoms through copying their peers.

Good luck.



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21 Oct 2010, 11:40 am

jerrycubbins wrote:
My wife and I had discussed the possiblity of our daughter to have autism/AS in the past when she was an early toddler but not for a couple of years. Many of the things we observed back than have improved or dissappeared. She now shows a lot more interest in people, volunteers with acts of affection towards us and her baby sister.


i pulled this section out because i wanted to point out that this is not uncommon to see in autistic children. autism is a pervasive developmental disorder, that means it lasts throughout the persons life and affects their development. sometimes we DO see improvements or even the disappearance of autistic traits as the person learns coping mechanisms, develops further, or begins learning social interaction skills by watching others. that does NOT mean that the autism goes away. the disorder is still there, just masked better. autism is not just the expressed traits, its a fundamental difference in how the world is perceived, how we are affected by sensory input. that doesnt change even when the traits change.

its possible that is whats happening with your daughter if she does have autism. its also possible that she would still fit the diagnostic criteria for pdd-nos which is another one of the autism spectrum disorders. the opposite can also be true, that the behaviors and expressed traits increase as they age, and it can be helpful to have that diagnosis and supports ready to go if that happens.

whether you decide to get the diagnosis is up to you as parents. for my family, we do not view it as a label. its a diagnosis. it means you can develop a treatment plan, a roadmap for the future. its also sometimes necessary to receive certain benefits or treatments.

many of the behaviors you list do fall right in line with autism. the having to call her name several times before she hears? VERY VERY typical autistic behavior. they have an ability to hyperfocus and block out the world around them to the point it can be hard to break into that circle of concentration.

you may do better looking for a list of common autistic traits than going strictly by the diagnostic criteria. maybe that would help you see more clearly whether she exhibits similar traits. things like toe walking, lining toys/objects up in rows, literal interpretation of language, difficulty transitioning from one activity to another, black and white thinking, etc. i dont have a list handy but a little googling or asking on the forums here should get you what you need.

i would also encourage you to look at the diagnostic criteria for classic/kanner's autism and pdd-nos in addition to asperger's. the criteria are different so you may see a closer link to one than the others.

whether your daughter grows up to have a "normal life" or not isnt really the issue. there are a huge amount of autistic adults who grew up and have families and jobs and what would be considered a "normal life." but what was their journey like on the way there? think of it like your daughter is carrying a backpack full of rocks on her back. she will learn to compensate for it and make her way through life and have a normal life. but if you know that backpack is there, you can help support her, help her learn how to adjust for it. you can help her live the best life she can, an easier life, and reach her potential. i can see the same thing with my 4 yr old autistic son, he will make it through school and life even if we did nothing, but it wont be the best, easiest, most enjoyable way for him to grow up.

your daughter does sound beautiful by the way =)


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21 Oct 2010, 12:50 pm

ediself wrote:
(e) impairment of comprehension including misinterpretations of literal/implied meanings
I can’t really tell.

then do something like this, tell her something that could have more than one meaning, and observe if she takes some time to think it over. (breaks eye to eye contact for a sec) or tell her a joke she never heard before, a simple age adapted joke. if she says"that's just impossible..." or asks "what is the pea doing in an elevator then??"instead of laughing...just try it :wink:


I don't know..... my DS has great coping mechanisms. He can usually tell when someone is telling an actual joke. He knows to laugh at a joke. Did he know what it meant.... no! It has been a startling awakening to find out how little DS understands while all along being able to converse at way above age appropriate levels. Hmmm another clue that I never thought of.

To the OP - Here is my reality; My kid was struggling so much more than I understood. By my not accomodating his AS (or As like needs) he had to work twice as hard to function. Once the demands increased at about nine years old, he could no longer cope. We didn't realize that he needed speech or occupational therapies. We also didn't realize how upset DS was when we made changes to his environment. He dever complained about changes....however he would often have tantrums or meltdowns following. We didn't put 2&2 together until he was at crisis level.

If your daughter does indeed get a dx, what a wonderful opportunity to support her as she needs. If I had the chance to do it all over again, I would grab the opportunity to understand these differences - what a blessing. His life has been way harder than it had to be.



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21 Oct 2010, 3:26 pm

I'm still working on understanding autism/aspergers, but I am fairly familiar (and long diagnosed) with ADD.

I think you should stay tuned and see what happens. Some of the traits you mentioned really stood out to me as also being common traits in children with ADD (especially without the "H"- hyperactivity)

*Not waiting her turn -impulsive trait
*Occasional bursts of hyperfocus -it's a myth that people with ADD are incapable of focus. what we lack is focus control. I get very hyperfocussed, and it frequently causes issues in home life.
-Missing social cues -Yeah... what can I say? Learning/catching the social cues requires some degree of attention to social cues.
-Fleeting eye contact -can be a sign of "my mind is about 50 mils away, right now"
-not considering others' feelings -hard to consider what hasn't yet grabbed your attention.

There is often a certain mental urgency in AD/HD. It isn't usually tied to obsessions or rituals, but sometimes to the fear of losing a beautiful thread of thought. A favorite quote of mine from an ADHD child:

"My thoughts are like butterflies. They're beautiful, but they fly away"
(via Dr. Ed Hallowell in "Delivered from Distraction")

When every thought is exciting and beautiful and absolutely fleeting, you can't willingly let go. The difficulty in holding that thought... it's like finding a robins egg, and picking it up with a spoon to carry it back to its nest outside your bedroom window. It takes intense energy to hold that spoon steady so it doesn't wobble and drop the fragile egg. In that moment, it simply isn't possible to look away or worry about silly details like tracking mud and waiting your turn. It becomes urgently important to take that egg where it needs to go.

There are a few possible outcomes when carrying the egg:
1) Success! The Egg is back in the nest, but there's a good chance that mother is scowling at you for tracking mud and brother is complaining that you cut him off in the doorway.
2) Failure! Perhaps mother interrupted and insisted you remove your boots, or brother upset you by insisting it was a fake. Maybe the egg shatters, or you simply gave up.
3) Pause! You set the egg in a safe, temporary place while you resolve the other nagging issues. The egg has a good chance of becoming the latest in a long series of unfinished projects.
4) Help! Father happens to understand these things, and rescues you. He holds the egg while you take care of your boots and mentally map the situation with your brother standing in the doorway, and even walks with you to help you navigate any future obstacles.

That's what ADD feels like for me.

But.. If I try hard enough, I can twist any list of traits to look like possible ADD. There's simply no substitute for Knowing your child. All the evaluators and teachers and doctors will interact one on one with your child for little more than moments. On the other hand, there is nothing they know that you can't learn, given time and effort. If you make serious study of the possibilities, no one will be in a better position to make sense of her internal workings.

Continue to harness all your nervous energy and stress into study. In addition to helping you gain understanding, the productive action might help take the edge off your anxiety.



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21 Oct 2010, 3:36 pm

Girls with AS often have more issues when they're older, yes, but I would have still fit the criteria at a young age.



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21 Oct 2010, 4:16 pm

Kailuamom wrote:
ediself wrote:
(e) impairment of comprehension including misinterpretations of literal/implied meanings
I can’t really tell.

then do something like this, tell her something that could have more than one meaning, and observe if she takes some time to think it over. (breaks eye to eye contact for a sec) or tell her a joke she never heard before, a simple age adapted joke. if she says"that's just impossible..." or asks "what is the pea doing in an elevator then??"instead of laughing...just try it :wink:


I don't know..... my DS has great coping mechanisms. He can usually tell when someone is telling an actual joke. He knows to laugh at a joke. Did he know what it meant.... no! It has been a startling awakening to find out how little DS understands while all along being able to converse at way above age appropriate levels. Hmmm another clue that I never thought of.

To the OP - Here is my reality; My kid was struggling so much more than I understood. By my not accomodating his AS (or As like needs) he had to work twice as hard to function. Once the demands increased at about nine years old, he could no longer cope. We didn't realize that he needed speech or occupational therapies. We also didn't realize how upset DS was when we made changes to his environment. He dever complained about changes....however he would often have tantrums or meltdowns following. We didn't put 2&2 together until he was at crisis level.

If your daughter does indeed get a dx, what a wonderful opportunity to support her as she needs. If I had the chance to do it all over again, I would grab the opportunity to understand these differences - what a blessing. His life has been way harder than it had to be.


i forgot i did that too. i still do. but would you say she'd know to laugh at a joke at 5 years old? i learnt it the hard way aged 13, my son is doing it though, and he's almost 9. but i don't remember him laughing at a joke aged 5...he'd say "nonsense....."lol....



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21 Oct 2010, 5:19 pm

I understand the conflicting emotions you are both having. But, based on your description, your wife's personal issues with the label of Autism are going to do significant harm to your daughter in the long run.

Aspergers makes my son who he is, and oh, how I LOVE who he is. I embrace autism, respect it's powerful influence and often its significant challenges, and together my son and I find ways to make the world more accepting of his neurological differences.

If your wife truly believes that finding out your child has Aspergers won't affect anything you do for her - then she doesn't understand or respect the significance of autism. It isn't "just a label". It is a significant neurological difference that is an integral part of who your daughter is (if in fact she has Aspergers).

Denying it, or ignoring it, is the same as denying or ignoring your daughter. There are going to be very specific therapies, accommodations, considerations, and strategies that you, she, and all her caregivers and teachers will need to understand and implement if you want to ensure she has the best chance at a life of happiness and personal success.

She needs you and her mother to be strong enough and mature enough to let go of your preconceived notions and biases toward autism, and be powerful advocates for her in this tricky neurotypical world she must navigate through.


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jerrycubbins
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21 Oct 2010, 6:40 pm

Dear all,

I am overwhelmed by the abundance in replies and very grateful for your effort. They were very useful. I tried to clarify and take futher some of the points raised.


To ediself:

>does she appear to be hypersensitive emotionally?

No

>have you had the instinct to protect her from her "mean "peers since she started socialising?

This is a difficult but important point. She doesn't need protection as such. Mostly I felt the need to encourage the other children to answer back to my daughters approach. Kids where we live seem generally quite aloof or shy while my daughter is not. She breaks the ice and starts talkig to them first things like "Hi", "what's your name", "I am here with my dad..." etc but she get either no answer, just a name and then nothing or on rare occasions things turn out quite well, I remember this slightly older kid who showed her how his toy parachute worked and they took turns in playing with it. It was great.
Another thing I remember clearly from a few months ago over the summer was this family with a 8-9 year old boy who were all playing with a cloth-made little frisby. My daughter approached them and her body language was clearly trying to say she wants in. They let her have a few goes maily because the frisby landed accidentally close to her but after a while it was clear from a distance that they didn't want her there. She kept running from one to the other after the frisby not realising this. What kind of people would do that to a 5 year old girl in the park even if they don't know her and they want their little group. I had to go and take her away; she didn't like it. I tried to explain about privacy and had to promise I would buy her a frisbie too.

The social interaction is akward sometimes but only with children she meets for the first time. With her sister, friends and relatives she interacts just fine. Although I am starting to doubt myself a lot.

>does she appear shy at times and very at ease at other times?

She is not shy. When she answers back to people she doesn't know she puts on a sheepish, spoiled-kid-type voice initially maybe even putting one cheek on the shoulder but that doesn't last long.

>is she silent a lot , does she seem to observe everything?

No and no. Very talkative and active.

>but if she seems not to approach her peers in a way they find "normal", and she doesn't get what she's supposed to
>do to be liked more, I suggest you ask her about those things. of course at her age she might still lack
>introspection but you could infer from her words if some of the things i mentionned seem to be true for her.

Difficult. Too little for that kind of conversation I think.

>(e) impairment of comprehension including misinterpretations of literal/implied meanings
>I can’t really tell.

>then do something like this, tell her something that could have more than one meaning, and observe if she takes
>some time to think it over. (breaks eye to eye contact for a sec) or tell her a joke she never heard before, a
>simple age adapted joke. if she says"that's just impossible..." or asks "what is the pea doing in an elevator
>then??"instead of laughing...just try it

Another one which is difficult. I am not sure I can come up with many examples to test that myself.

> but would you say she'd know to laugh at a joke at 5 years old? i learnt it the hard way aged 13, my son is doing
> it though, and he's almost 9. but i don't remember him laughing at a joke aged 5...he'd say
> "nonsense....."lol....

Again, difficult at 5.




To Natalial:

> How will diagnosis help your daughter? Will she get appropriate support at school? If yes, it is worth pursuing.

That is part of the problem. We don't know. We just imagine how the diagnosis would leak from the teachers to the other parents and things might become worse by her becoming that girl with AS, very clever and beautiful but different - hence the stigma idea.




To AnotherOne:

> I would avoid "official" diagnosis if her problems are not hampering. All evaluations and stuff are very
> unreliable in mild cases.

We would too except, as I wrote in the initial post, this may regarded as neglect at this point.
We are not yet convinced that therapy or school would be able to help much.




To Mama_to_Grace:

> Really, the diagnostic criteria is not what should be focused on, eventhough I want to point out to you that the
> criteria does not call for a "quantitative" analysis of the criteria, but a "qualitative" basis, which you
> probably understand what that means.

The criteria are whooshy-whashy, I know. This is proably the reason why the borderline cases are controversial and different opinions are different.
The only thing is that I feel that the professionals involved would rather diagnose more false positives that more false negative and that they would rather put more cases that would go under the threshold into the milder spectrum.

> I would suggest the book "The Complete Guide to Aspergers" by Tony Attwood. It can go into the diagnostic criteria
> much more in depth and explains a lot about how girls can mask the symptoms through copying their peers.

Thanks for that. I ordered it already.

> However, the benefit of early diagnosis is well documented-those who enter early therapeutic intervention do much
> better long term.

Has your daughter improved with theraphy ? In what respect?




To azurecrayon:

> whether you decide to get the diagnosis is up to you as parents

It's now out of out hands I think and we accepted we will have to go all the way.

> for my family, we do not view it as a label. its a diagnosis. it means you can develop a treatment plan, a roadmap
> for the future. its also sometimes necessary to receive certain benefits or treatments.

I agree with all you said. I meant "label" for the rest of the society /school /friends not within our family.

As you suggested I found a list of common autistic traits online.


****Scatter/splinter skills of abilities – such as poor gross motor or fine motor skills and the ability to read at a very young age
No
****Oversensitive or under sensitive to pain
No
****Desire for the same daily schedule, toys, type of clothes or an insistent on “sameness”
No
****Repeating words, phrases in place of typical language or conversation (This is known as echolalia)
No
****Difficulty expressing needs – for instance, using pointing, gestures or tantrums instead of using words to express their needs
No
****Finding situations funny or laughing at times when it is inappropriate (i.e. laughing at a baby crying.)
No
****Activity is noticeably under active or over active
No
****Excessive or Frequent tantrums
No, at least not for a few years.
****Can be aggressive or self injurious
No
****Prefers to be alone – may have social skills deficits
No she doesn't prefer to be alone, probabaly does have social skills deficits although I cannot really figure what they are
****Autistics can act deaf or be non responsive to verbal cues
Possibly, reacts with latency to calling her name
****Odd play such as; spinning objects, or using toys for something besides there their intended purpose or using an odd attraction to an item that is inappropriate for age
No
****Non existent or poor eye contact
No
****Non responsive to typical teaching methods
Not sure
****May respond negatively to crowds or not able to mix well with others
No
****Difficulty with holding a conversation
No that we noticed
****May not like hugs, or to be cuddled.
No
****Sensitivity to loud noises, tags in clothes, coarse clothing, lights, and smells
What she does do is put her hand over the ears when she is scared, for example when seeing something scarry on the TV.
****Frequently uses peripheral vision to track items (e.g., rolling car along countertop at eye-level)
No
****Self-limited diet - some children have a broader range at an earlier age but over time may start self-limiting their food selections. Self-limiting can also include food that must be all the same color, size, shape etc.
No. She ahs a good appetite.
****Severe food allergies
None
****History of chronic ear infections as an infant
No
****Severe gastro-intestinal issues / chronic loose and/or foul-smelling stools.
No
****Lack of imaginative play or imitation.
I don't think so.




To Kailuamom:

> If your daughter does indeed get a dx, what a wonderful opportunity to support her as she needs. If I had the
> chance to do it all over again, I would grab the opportunity to understand these differences - what a blessing.
> His life has been way harder than it had to be.

I really hope you are right with this one if she turns out to be AS.




To blynk:

Interesting thought about ADD. I will have to into it in more detail. The teacher at school says she maintains attention very well and answers appropriately.

> If you make serious study of the possibilities, no one will be in a better position to make sense of her internal
> workings. Continue to harness all your nervous energy and stress into study. In addition to helping you gain
> understanding, the productive action might help take the edge off your anxiety.

That would be nice.




To Caitlin:

> I understand the conflicting emotions you are both having. But, based on your description, your wife's personal
> issues with the label of Autism are going to do significant harm to your daughter in the long run.

I am sorry I didn't make myself clear. It's probably the way I phrased my sentence. My wife does not have a personal issue with the label of AS at all, she has a problem with the acceptance of autism in the society we live in, not always fair and frequently double faced, cruel and hypocritical. We all know how intolerant human kind can be and how we treated many people all along history just for being different. I appreciate your post.